Tuesday, February 16, 2010

A couple of years ago, I wrote about proposed legislation that aimed to increase food allergy awareness and ingredient familiarity in restaurant kitchens. Championed by superstar chef and food allergy advocate Ming Tsai, the proposed bill would also ask restaurants to put a notice to customers on the menu that it is their obligation to inform their server of any food allergies.

At the time, I wrote “As customers, it is our job to advocate for ourselves, ask questions, and disclose relevant information, just as it is the responsibility of servers and kitchen staff to try to answer our questions as thoroughly as possible and accommodate us as much as can be reasonably expected. This bill makes that process a lot easier.”

And I still strongly believe that. Between understanding and preventing cross-contamination to keeping a master list of all ingredients, such moves make the dining experience easier for both the customer and the wait staff, who would have access to a lot more information when customers inquire about the menu. It’s about shared responsibility.

Imagine, then, how pleased I was last week when I saw this update in the Boston Globe about how the Mass Department of Public Health plans to implement these changes this summer.

(And, coincidentally, having just dined at Ming Tsai’s Blue Ginger again recently, I can vouch for how stress-free and relaxing the experience it is when you know your meal is safe.)

Perhaps I am just naïve, but what I was not prepared for were the angry, ignorant, and vitriolic comments readers left at the end of the article. Sure, there were comments that applauded the measures and saw the potential, but I was shocked at how many were so passionately awful about it. For some, it seems that any legislation, whether it directly affects them or not, is anathema and is yet another example of the “nanny state” liberal politics in Massachusetts.

Whatever.

Here’s the rub: if you don’t have food allergies, you don’t have to ask any questions, and nothing about the food you would have ordered anyway will change. This bill isn’t an iteration of Big Brother and won’t dictate what you eat, it will simply make it safer for others with food allergies to order food, and will make it easier for kitchens to share information about their ingredients.

Others complained that waiters will have to now explain the entire menu to everyone, or that the private sector should not have to cater to people with food allergies with the government looking over their shoulder.

Huh?

Only people with food allergies and specific questions about dishes will need explanations, and if that’s not you, why do you care? And if someone in your dining party has allergies, why would you begrudge that person his or her questions?

I just don’t see how training kitchen staff on clean cross-contamination measures or having a comprehensive list of ingredients on hand is forcing the private sector to cater to us.

I’ve lived with a diagnosis of celiac disease for six years and I’ve learned a lot about how to eat gluten-free. Through trial and error, I’ve also learned how to eat out safely and with confidence. I love it when places have GF menus, but I don’t expect them. I go out knowing the risks and am fully responsible for them. I alert my server of my issue and ask questions politely. I’m not demanding, and if all I can eat is a salad (and that rarely happens these days), I am fine with that.

I don’t expect staff to cater to me, and I don’t get bent out of shape when it turns out there isn’t much to eat. That’s the risk I take when I go to restaurants without GF menus.

But what I do expect? I expect that when I ask a few simple questions, the staff will be able to answer them. I expect that when I am expressly told something is GF that it truly is safe, and hasn’t been cross-contaminated. Implicitly, that means the kitchen understands that telling me something is GF means they’re telling me I won’t get sick. If this bill streamlines this process for all parties involved, that’s great.

Fortunately, my risks are not potentially life-threatening the way they are for others with severe food allergies. I take them extremely seriously, but if some uninformed waiter serves me food that contains gluten, I will be sick for a few days. It’s unpleasant and unnecessary but in the immediate moment, it won’t kill me.

Others aren’t so lucky. Is it really that inconvenient to make sure the people preparing the food know what’s in it?

My personal favorite of the comments went something like this: Shouldn’t people with allergies know that?

We’re not under any illusions our dining staff should be responsible for diagnosing us. We’re well aware of our situation and that’s why we disclose any allergies and ask questions.

I was once on a plane with a man who was outraged he couldn’t eat peanuts on the flight because someone on board had such a severe allergy he/she could experience anaphylaxis from being near them. He didn’t even have peanuts; he was incensed that someone’s life precluded his right to eat hypothetical peanuts.

Yikes.

To all the angry, put-out people out there, perhaps if they were to develop food allergies they would refrain from eating outside their home. But if they are ever in the position where they want to be social and go out to eat and what they eat could hurt them, I hope for their sakes they receive the correct information.

Saturday, February 06, 2010

In the spirit of Valentine’s Day and all things related to love, she posed the following question:

Love? Hate? What are the four letter words you use to describe your life with chronic illness?

I’ve been thinking a lot about those two words, love and hate, and how they figure into my perspective. After careful consideration, I don’t think either of them are the four-letter words I’d choose to describe my life with chronic illness.

Certainly, they are a part of my life. I’m not trying to pretend otherwise.

For instance, I don’t like when I have to miss things or cancel much-anticipated plans or let people down when I am sick. I dislike how overwhelmed I get when things are acute and work and frustration and guilt pile up, and I cannot take anything for granted, including the small things healthy people wouldn’t have to worry about. I don’t like that my first intact childhood memory is from a surgery when I was a toddler, and that I can mark many holidays depending on which hospital I was in and for how long.

But even in the moments when all the varied losses seem like more, they are usually smaller grievances. Hate is too strong a word. Or perhaps there is enough resignation (or experience?) built in after three decades that it does not need to escalate to that point.

I love that despite illness I am doing many things I am passionate about and have created a life that is (too) full. I am fortunate to have found somewhat of a balance between what I need to do for my body and what I need to do for my mind.

I love that after 29 years of surgeries, infections, and setbacks I am in a relatively good groove with the best doctors available to manage my definitive diagnoses. I love that after 23 years of near-constant high-dose steroid therapy I have a break, and the highs and lows are much smoother.

I love that I am married to a person who sees me as a whole person and not a constellation of symptoms, whose compassion and selflessness is intuitive and instinctive.

I love that there are people who know me as a relative or friend, a writer or editor, a professor or consultant, but don’t automatically think of me as “sick.”

And I appreciate that when things are tough and crises occur, they do think of me as sick and understand my situation enough to know homeostasis will return at some point.

So if I had to pick other four-letter words to describe life with illness, mine would “give” and “take.” Illness takes away little pieces of the identity I’ve worked hard to build and I push back and reclaim them. Illness makes demands on me and those in my life and we acquiesce when it is prudent to, and move forward despite those demands we can.

I am no Pollyanna and I won’t pretend that I wouldn’t love to be healthy. But, I love that I do not have to hate my illnesses…that would be giving them too much.

And in a much more exaggerated way, the same thing is happening with what appears in my mind as full caps, the much longed-for and equally feared BOOK 2.

I’ve discovered something: I really love research. Getting lost in journals, tracking down archived information, furiously annotating books (and books, and books). Of course I love the writing part, but that was a given. The more research I do, the more I want to write, the more the ideas develop and complicate each other in ways I didn’t foresee.

But the past couple of weeks I’ve found that I’ve used research as a distraction, something tangible I can say I’m doing for the oh-so-demanding BOOK 2, something I know is important to the overall process.

But deep down I know I’m doing it because I have so many ideas in my head, so many images of what material I’ll add to which paragraph and which interviews will flow best, that I’m running in circles.

Now, I’ve tried to be proactive about this. I diligently schedule in daily chunks of writing time, even if it means pulling back-to-back 7-8 hour workdays on the weekend. I precisely list the topics I need to address on a particular day.

I even recently hired a research assistant, who is fabulous and competent and efficient. I make lists for her, and she skillfully completes the tasks and gets me the information I need.

(I know! It’s the best.thing.ever.)

And yet I remain trapped in my own head, word counts taunting me and stacks of research beckoning me.

One of my students wrote recently that the hardest part is the doing—after free-writing and just seeing what comes about is the best way she can eventually get around to her point.

I think that could be the solution. I’m so immersed in ideas that I’m hemming myself in. I need to let go and see what happens, with less analyzing what I need to write or should write and more barebones writing.

Letting go is never easy for me. (Seriously. Ask my husband when it’s midnight and I’m obsessing about something.)